Supported Decision-Making in Illinois

Hello & Happy Spring!

This week, we will be sharing information related to Supported Decision Making (SDM). If you missed our latest webinar on supported decision making and transition-age youth with extensive support needs, you can find the recording on the Family Matters website: https://www.fmptic.org/recordings/family-matters-recordings. You will find pertinent information, as well as a ton of great resources below. As a special education teacher, I wish that SDM had been a legal option of decision-making to support my students and their families in Illinois when I first started teaching. As of February 2022- it is! I hope you find this information and resources helpful to you or those involved. Feel free to share these resources with those that you know! Sharing is caring 🙂

We are always here for any questions you have or experiences you may want to share! 

Talk soon!

Megan

What is Supported Decision Making? 

• Supported decision-making (SDM) is a tool that allows people with disabilities to retain their decision-making capacities by choosing supporters to help them make choices. 

• A supporter is someone who the person using SDM selects to help them in decision making. These are trusted advisors such as friends, family members, or professionals.

• Supporters agree to help the person with a disability (principal) understand, consider, and communicate decisions, supporting the individual with a disability to make their own, informed choices. 

The Illinois Supported Decision-Making Agreement Act

• For adults (18 or older)with intellectual and or developmental disabilities (ID/DD) 

• Provides legal recognition to SDM agreements

• Requires third parties (landlords, service providers, medical professionals, schools, vocational providers) to recognize terms of the SDM agreement(s)

• Find more information HERE

What does Supported Decision-Making Look Like? 

• Finding tools to support a person with a disability to understand, make, and communicate their own choices: 

• Plain language, Visual and/or Audio Access

• Extra time to discuss options

• Create a list of pro’s and con’s

• Role Play

• Bring a supporter to a appointments to take notes and support the individual to remember and discuss options

• Opening a joint bank account to manage financial decisions together 

• Supporters may…

• Help the principal gather information on:

• Living options, work situations, medical treatment,
  relationships, benefits, resources

• Communicate information, track services, support appointments

• Assist with questions, Support advocacy

• Have conversations around final decisions

• Supporters may NOT…

• Make decisions for the principal

• Access any information without consent

• Uses information about the principal for any purpose other than supporting the principal

• Be paid to be in this role

Supported Decision-Making Process Flowchart

Guardianship vs. Supported Decision-Making: The Basics

Guardianship	SDM
Decided by a judge Person with the disability does not have control The person with the disability can lose the right to: Choose where they live How they use their money Who they spend their time with	The person with the disability makes the decisions The person with the disability is in the control Supporters help the person with the disability with: Everyday things Medical decisions Where to live or help with money

Guardianship vs. Supported Decision-Making: Assessment of Needs

Guardianship	SDM
Based on the person’s I.Q. score and diagnosis The court looks at what the person can do independently, without any assistance or support The court assumes that these needs will remain the same over the course of the person’s life	Strengths and support needs are discussed by the person with the disability and their supporters Person’s abilities are based on assessment of what they can do alone and with support The person with the disability has the ability to modify supports and supporters overtime

Identifying Alternatives to Guardianship Tool

Supported Decision-Making Resources

• Illinois Guardianship & Advocacy Commission

• Supported Decision-Making: Brochure

• SDM FAQ

• SDM Learning PPT for Individuals with Disability

• Self Advocacy Alliance

• IGAC

• Self-Determination

• The Arc of Illinois

• National Resource Center for Supported Decision-Making

• Center for Public Representation: Supported Decision-Making

Resource Alert! “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults”

 

Hi There!

This week, we will wrap up our final blog on tools and resources to support college students with disabilities. A phenomenal resource I would like to share with you is titled, “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults.” It was developed by the Autistic Self Advocacy Network and includes topics such as accommodations, housing, health and safety, advocacy, and social life. Here is a short excerpt from the Forward of the book, written by Ari Ne’eman.

“In addition, this book is focused on more than just succeeding in the classroom. While classes and homework are important parts of college, no one tries to tell non-disabled students that this is the totality of their college experience. Clubs, social activities, dormitory life, parties, sex and relationships and countless other things should take up at least as much of your waking hours as schoolwork does. For those of you who will be living on campus, and even for many of you who will not be, college isn’t just a place to go to take courses—it is a way of life. We’d be doing you a disservice if we didn’t talk about the parts of the college experience that happen outside of the classroom.”

We hope this resource may be of benefit to you, a loved one, a neighbor, a student, or a colleague!

Warmly,

Megan

Accommodations in College and the RISE Act

 

Hello and Happy New Year!

I hope the beginning of 2023 is off to a wonderful start for you and your family! This week, we are going to continue our focus on post-secondary education. This blog is an excerpt from the Family Matters Winter 2022 Newsletter regarding accommodations in college and the RISE Act. This article was written by the Family Matters Executive Director, Debbie Einhorn, M.Ed. We hope you find it helpful!

Stay warm!

Megan 

Preparing for Transition to College 

When a student with a disability is preparing to attend college it is important for them to understand their rights. The Office of Civil Rights (OCR) strongly encourages students with disabilities to know their rights and responsibilities and the responsibilities of institutions of postsecondary education under Section 504 and the Americans with Disabilities Act. Institutions of postsecondary education have no legal obligations under IDEA. IDEA requirements apply to state education agencies, school districts and other public agencies that serve IDEA-eligible children. 

Disability supports and services in college differ significantly from those a student may receive during elementary and secondary school. During elementary and secondary school a student with an IEP may receive accommodations and modifications. Once a student graduates from high school and receives their diploma the IEP expires, meaning the IEP does not follow a student to college. Colleges are required to provide reasonable accommodations for students with disabilities, but are not necessarily required to provide the same type of services that were in the high school IEP. 

Some common college accommodations may include extended time, use of a calculator, copies of notes from a classmate, use of audiobooks, or use of speech to text programs. 

It is important for students to understand what supports and services are part of their IEP during high school. Students also should understand the difference between an accommodation and a modification. An accommodation allows a student to complete the same assignments as other students, but permits a change in the timing, formatting, setting, scheduling, response or presentation. An accommodation does not alter what the test or assignment measures. A modification adjusts the expectations for an assignment or a test. It permits a change in what a test or assignment measures. Examples include: a) a child is permitted to complete only part of a standard; b) a child is given an alternate assignment at a different level instead of the standard assignment.

Families and students should maintain copies of high school records. These records are important when requesting accommodations at the college level and obtaining other disability related adult services. A Summary of Performance (SOP) must be completed during the final year of a student’s high school education. The SOP along with additional documentation may be necessary as the student applies to a college or university. To learn more about the contents of the Summary of Performance, contact Family Matters. 

For several years, advocates have been pushing a bill called the Respond, Innovate, Support and Empower (RISE) Act. The RISE Act would make the transition to college a little smoother by requiring colleges and universities to accept students’ individualized education programs (IEPs) and evaluations from school districts as proof of the need for accommodations and supports. This would eliminate the need for students to again undergo expensive evaluations just to provide evidence to the post-secondary schools that they have a disability and need certain supports in order to participate in college coursework. Students who have disabilities such as cognitive impairments, dyslexia, dysgraphia, auditory processing disorders, autism, and other learning disabilities, will still have those disabilities when entering college and there should be no need to have to go through the time-consuming process of re-evaluations to show that they still have those learning differences. 

Although the Individuals with Disabilities Act (IDEA) which requires IEPs for students with disabilities during primary and secondary school, no longer applies after high school graduation, there are other federal disability rights laws that entitle adults with disabilities to reasonable accommodations in education and employment. Those laws include the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. 

Recently released federal data shows that among college students who were ever diagnosed with a disability, just 13% informed their college of their disability status. Some undergraduate students don’t disclose their learning disabilities to their colleges and universities because they never learned to advocate for themselves while in high school, or may be unaware of the services that could be available to them in postsecondary schools, or because they fear disclosing a disability might count against them. 

In addition to requiring colleges to accept students’ primary and secondary school records as proof of disability, the RISE Act would create a $10 million technical-support center for college faculty to learn more about the needs of students with disabilities, provide a centralized source of information about accommodations for students with disabilities and their families, and require colleges and universities to report more data on students with disabilities. 

After years of advocacy efforts, this year for the first time, the RISE Act passed the U.S. House of Representatives, the furthest it has advanced in the legislative process. There is no vote yet scheduled in the U.S. Senate. If you would like to see this legislation passed by both chambers and sent to the President to be signed into law, you can contact your state senators to encourage their support of the RISE Act. 

If you need help finding the contact information for your senator, visit this website: https://www.congress.gov/ members/find-your-member 

Helpful Resource: https://www2.ed.gov/about/offices/list/ocr/letters/parent-20070316.html

Pursuing Post-Secondary Education: Think College!

Hi There!

We hope your holiday season is off to a great start and this blog finds you joyful and well! In case you missed it, Bridget recently blogged about how her life has been going at UIC and shared an interview recently conducted with Ryan Burke, an incredible self-advocate who works in schools and has a passion for musicals and enjoying time with loved ones. Make sure to check it out! This time, we will continue exploring post-secondary experiences and opportunities!

Stay warm! Later this month, we will be back with information on how to access accommodations in college and where to go on campus if you are needing support!

Warmly,

Megan

Let’s dive back into pursuing post-secondary education! Today I will be sharing about Think College! Think College provides resources, technical assistance and training related to college options for students with intellectual disability, and manages the only national listing of college programs for students with intellectual disability in the United States. They are a national technical assistance, research, and evaluation center dedicated to developing, expanding, and improving higher education options for students with intellectual disability. With a commitment to equity and excellence, Think College supports evidence-based and student-centered research and practice by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.

Here are some exciting and supportive resources if you or someone you know is interested in attending college! 

Searching for Colleges? The Think College Search features information on 314 postsecondary education programs for students with intellectual disability. There are 16 here in Illinois!! You can find them HERE. 

Are you wanting to share more about Think College with parents, friends, family, or colleagues? You can watch a short 25-minute film produced by Think College that explores the growing movement to include students with intellectual disability in higher education. Click here to access the short film, Rethinking College.

Looking for more information? Check out their FAQ HERE!

Unsure of what questions to ask when researching programs or visiting colleges? HERE is a list of questions you can ask of college programs. 

Pursuing Post-Secondary Education

 

Hi Family Matters Community!

I hope you had a lovely Thanksgiving and/or fall holiday break!! This November and December, we are going to highlight Post-Secondary Education and related experiences. We will kick-off with a re-share of our very own Bridget Brown’s experience at the University of Illinois at Chicago (UIC) in a new inclusive program titled, the Co-Op program, under the Disability Studies College. If you loved any of the stories, feel free to comment on this post and share below. If you or someone you know is doing anything related to self-advocacy or wants to share their story, please let us know! We are also sharing our blogs on our Twitter @FamilyMattersIL- so your story could also be shared there! Now sit back, grab a cup of coffee or tea, and learn more about Bridget’s college experience!

Warmly,

Megan

Hello again

I hope you are having a fun Fall so far. Wow, can’t believe that 2022 is flying by. I love fall! 

My last blog was an interview with my friends Kelly & Karen Neville. I learned so much about their life, and their business “Special Sparkle”.   I hope you enjoyed reading about them.

Today, I thought I would give you an update about my new college experience. Maybe some of you are thinking about a post- secondary college experience or some of you might already be in college.   I am excited that some of you might be considering college for your future.

I went to College of DuPage for a number of years. That is my local community college.  They have lots of exciting classes there but I was hoping for something more inclusive.  I also did a summer college program during Covid at John Wood Community College online.  That was fun!

So you might be wondering what is my college experience like now. I currently am a student at UIC (University of Illinois CHICAGO). I am in a new inclusive program called the CO-OP program, under the Disability Studies College.  This program just started up and it is very exciting.

I also have an internship in the School of Nursing at UIC.

I started last Spring and my first class was called Radical Inclusion.  This was a perfect class for me because I am an inclusion advocate and it gave me information about the history of inclusion so I know how to be a better advocate for people with disabilities. It was very interesting. 

I also took a class called Career building.  This was to help me prepare to get an internship and employment.  I learned how to make a cover page and learned the difference between formal vs informal questions. I also learned how to get a paid internship. Because of this class I now have a paid internship at the nursing simulation lab in the nursing department at UIC.    

During that time, I even made friends because I worked with a team of my peers who were also in the CO-OP program. Being part of this class I learned the importance of being professional in my relationships.

Now this Fall I am studying Disability in American film.   I am learning how people with disabilities are portrayed in movies and how that describes their life to people. That can be positive or negative.  I am learning that it is important to hear real voices of people with disabilities so they can share their stories about their lives.

I love my internship at the Nursing department.  I have an internship working in the simulation lab. I am also an actress and I work as a patient with a disability so the students can learn about how to work with individuals with disabilities in a health care setting.  It is very exciting and a new program for the nursing department.  I love it!

For me college life is wonderful!   Being part of a college and being included in general education classes is great.  I love working in a team with other students who are also in the program and some who are general college students.   I am looking forward to getting to know more students and professionals.  I just love being a student at UIC and working in the nursing department.

Life as a student is different but I am learning the ropes of being safe and using self-determination by speaking up for myself and for helping others out. I also learned that classmates are very kind, respectful and that I can trust them.

I hope you enjoyed my thoughts about my college experience.  If you are thinking about college, I encourage you to check it out and see what is available in your area and throughout the country.  There are lots of great programs!  I am available to share my experience with you so if you are interested you can contact me and we can talk more about my experience.

Have a great October (November!) and dwell in the possibilities!!

Bridget Brown

Special Sparkle

 

Bridget Brown

 

 

Hello again

 

I hope you are having a fun Fall so far. Wow, can’t believe that 2022 is flying by.

 I love fall! 

 

My last blog was an interview with my friends Kelly & Karen Neville. I learned so much about their life, and their business “Special Sparkle”.   I hope you enjoyed reading about them.

 

Today, I thought I would give you an update about my new college experience. Maybe some of you are thinking about a post- secondary college experience or some of you might already be in college.   I am excited that some of you might be considering college for your future.

 

I went to College of DuPage for a number of years. That is my local community college.  They have lots of exciting classes there but I was hoping for something more inclusive.  I also did a summer college program during Covid at John Wood Community College online.  That was fun!

 

 So you might be wondering what is my college experience like now.   I currently am a student at UIC (University of Illinois CHICAGO). I am in a new inclusive program called the CO-OP program, under the Disability Studies College.  This program just started up and it is very exciting.

 

I also have an internship in the School of Nursing at UIC.

 

I started last Spring and my first class was called Radical Inclusion.  This was a perfect class for me because I am an inclusion advocate and it gave me information about the history of inclusion so I know how to be a better advocate for people with disabilities. It was very interesting. 

 

 I also took a class called Career building.  This was to help me prepare to get an internship and employment.  I learned how to make a cover page and learned the difference between formal vs informal questions. I also learned how to get a paid internship. Because of this class I now have a paid internship at the nursing simulation lab in the nursing department at UIC.    

During that time, I even made friends because I worked with a team of my peers who were also in the CO-OP program. Being part of this class I learned the importance of being professional in my relationships.

 

Now this Fall I am studying Disability in American film.   I am learning how people with disabilities are portrayed in movies and how that describes their life to people. That can be positive or negative.  I am learning that it is important to hear real voices of people with disabilities so they can share their stories about their lives.

 

I love my internship at the Nursing department.  I have an internship working in the simulation lab. I am also an actress and I work as a patient with a disability so the students can learn about how to work with individuals with disabilities in a health care setting.  It is very exciting and a new program for the nursing department.  I love it!

 

For me college life is wonderful!   Being part of a college and being included in general education classes is great.  I love working in a team with other students who are also in the program and some who are general college students.   I am looking forward to getting to know more students and professionals.  I just love being a student at UIC and working in the nursing department.

 

Life as a student is different but I am learning the ropes of being safe and using self-determination by speaking up for myself and for helping others out. I also learned that classmates are very kind, respectful and that I can trust them.

 

I hope you enjoyed my thoughts about my college experience.  If you are thinking about college, I encourage you to check it out and see what is available in your area and throughout the country.  There are lots of great programs!  I am available to share my experience with you so if you are interested you can contact me and we can talk more about my experience.

 

 

Have a great October and dwell in the possibilities!!
Bridget Brown